Snapshots Of Bobby

One winter afternoon during my first year as a hospice volunteer, I drove slowly through the kind of neighborhood where the only people you see during the day are landscapers, contractors and housecleaning services and where one house is grander than the next. I was looking for the ranch house where Bobby had been living since his diagnosis.

Most people I visit, as a hospice volunteer, are my senior by 20 years or more, but Bobby was the first person I’d see who was my age. Too close to home, as it were; a reminder that, yes, it can happen to you. Worse, Bobby was in hospice care for ALS (Lou Gehrig’s disease), whose cruel impact I’d last encountered with my aunt 15 years earlier.

Heavy and pear-shaped, with a full head of gray-white hair and lopsided glasses, Bobby sat in one of three wheelchairs positioned side by side in a dark, silent and cluttered family room that felt like a cave and greeted me with a wan handshake. That first conversation was tentative, as awkward as a blind date.

Before I left, he said, “There’s no hope. And all I want is a cure.”

I felt that I couldn’t leave without responding; that he needed his fear and despair acknowledged.

“Well, there’s a different kind of hope,” I said. But even though this is what I truly believe — that there can be hope for good days, for good companionship, for the comfort of being with friends or family, for seeing another season — my words sounded hollow even to me.

***

Hospice volunteer Ellen Rand

In the course of a few months, it became clear that we had virtually nothing in common. But he did tell me about what he used to love to do: rollerblading, driving, going to Central Park. He brightened only in talking about his three German shepherds that he missed so much, who remained in his house in a nearby town, cared for by his girlfriend Jenny.

“Can’t the dogs stay here? Or visit?” I asked. He looked at me as if I’d asked if he could leap out of the chair and fly away.

“No,” he said. “My brother hates dogs.”

***

One time I rooted around my basement to find a checkers set because the week before Bobby had told me that he liked playing checkers. I won the first game we played. By the time we played the second, he didn’t have the strength to move his own pieces, but indicated to me where they should go. He won that game, which annoyed me no end.

“Two out of three?” I asked, my competitive streak raising its sly little head. But he was too tired.

Another time, when his voice was giving out, I told him I could play some music on my iPhone with the Pandora music app.

“Can you get Johnny Cash?” he asked. And I did, cranking up the volume. We sat in companionable silence, me on the couch in the family room, Bobby in one of the wheelchairs, as Johnny croaked about Folsom Prison and being caught in a ring of fire.

***

Bobby was released from his own prison in early May that year. I learned about it via a short email from our Volunteer Coordinator, chronicling his fatal breathing problems. It was a shock, partly because I had seen him just a few days before that. I’d left earlier than I normally would have then, when a friend showed up, presenting Bobby with a large, detailed drawing of his three dogs. I wanted to give them a little time together. And fully expected to see him the following week.

***

In hospice volunteer training, we’d talked about the Big Questions that people often focus on close to the end, if they’re blessed with a clear, conscious mind: What did my life mean?Why was I here? What was my purpose? What’s my legacy? And despite ample evidence to the contrary, I believe in the possibility of resolution and reconciliation and redemption. But for Bobby there was none of that.

I thought about how he left the world, in anxiety and fear, with many regrets. Was I of any comfort at all? I was a visitor, who played some checkers, played some music, told some jokes and listened to him expressing his sorrow and anger without telling him that everything was going to be OK.

A witness.

Ellen Rand is a hospice volunteer with Holy Name Medical Center in Teaneck, NJ and visits people in their homes, nursing homes and assisted living facilities throughout Bergen County, NJ. She has been a reporter and writer for more than 40 years, including a five-year stint as a weekly housing columnist for The New York Times. This piece is adapted from a book she is writing about end-of-life issues, whose working title is “Endings: Finding Hope and Comfort Through the Close of Life.”

Posted on Saturday, December 28th, 2013 at 10:15 am by lifemediamatters

Image Courtesy WikiMedia Commons

“I’m not used to such a frank discussion about sex. I’m more comfortable with the locker room bravado that passes as sex talk for us guys. At least in that situation, I don’t have to be honest.”

Michael is 52. Four years ago, he was diagnosed with multiple sclerosis. In the past two years, his disease process has escalated to the point in which he has become confined to a motorized wheelchair. Recently, he has had multiple MS-related setbacks that have kept him bedridden for several weeks at a time.

Things have become so difficult that several months ago, Michael was forced to sell his once-thriving law practice. The few hours of work he could manage each week there proved more frustrating than fulfilling.

Mike is often depressed. He continually repeats his self-defeating mantra: “I’m not half the man I used to be.” The superhuman support of his second wife Maryanne, his son Kyle and his beloved Seattle Seahawks are the only things that prevent Michael from killing himself.

The first time I met this couple, an exasperated Maryanne tearfully reported how Mike’s smoldering rage and bouts of sullenness terrorize the family. “I love him, but he’s gotta get off his pity-pot or I’m gonna walk, and take Kyle with me.” Mike sheepishly acknowledged his disruptive behavior. His ruggedly handsome face often distorts with shame. “It’s not me. It’s this damn MS. I just can’t seem to get it together. I feel like such a failure.”

When Mike and I have some time together, I broach the topic of sex. Mike blanches. I start by asking him some very pointed questions about his intimate life with his wife.

Mike responds:

“I’m not used to such a frank discussion about sex. I’m more comfortable with the locker room bravado that passes as sex talk for guys. At least in that situation, I don’t have to be honest. This is very intimidating.

I don’t want to talk about this because I’m afraid you’ll want to know how a gimp like me does ‘it.’ I would have to tell you that a gimp like me no longer does ‘it’ because he can’t get it up anymore.

I would probably then have to tell you how frustrating it is for me not to be able to make love to my wife, and how this is a source of constant friction between Maryanne and me. She accuses me of throwing out the baby with the bathwater. All she wants is for us to be close.

So you see, if I told you all these things I would really be embarrassed. So I’m not going to say anything at all.”

“I see,” I responded. “Do you really see yourself as a gimp? Or is that just a term of endearment you use for yourself?”

“What do you think? Just look at me. I’m one fine specimen of virile manhood, wouldn’t you say?”

“Ok, Mike, have it your way. Maybe you are a gimp. Although I wouldn’t have guessed by just looking.”

I tell Mike about another client I had years ago. His MS was even more advanced than Mike’s. His wife claimed that despite being a very large man and being bedridden, he was a remarkably good lover. She said he had a vivid imagination and an exceptionally talented mouth. He was affectionate and gentle, and there was absolutely no hint of a chip on his shoulder. My former client used to say that his pleasure came from giving pleasure to others.

Most men occasionally experience the inability to have an erection, but repeated problems, whether they are organic or situational, constitute what was once referred to as impotence.

Mike apologized. “I’m not myself today. Or maybe this is what I’ve become. I know my wife and son think so.”

“So is all of this rage just about being unable to have an erection?”

I tell Mike that many women don’t care if their partner has an erection or not. While losing the ability to have an erection may be a humbling experience for a guy, his female partner may have an altogether different experience. For her, it may signal the possibility of some really good sex.

I ask, “How do you feel about your oral sex technique, Mike? If Maryanne wanted you to pleasure her, would you be comfortable doing that?

I also ask if he is able to communicate his need for intimacy to Maryanne, and if there are any specific issues that prove to be barriers in the way of him asking for what he needs.

“We stopped talking about sex about the same time I got sick,” Mike responds. “Actually, we never really discuss it at all. Maryanne brings up the topic, I get angry, and she gets hurt. That’s how ‘discussions’ about sex go in our house.”

Mike tells me that he wishes he could let his wife know how ashamed he is, not for being such a bully, but for being a coward. How we can’t seem to get past saying “I’m sorry.”

I ask if he’s talking to his doctor about his concerns.

“Nope, I just figured there wasn’t anything to talk about. Besides, it’s too embarrassing to admit.”

That’s something I tell Mike he should reconsider, and I then give him this advice:

“First, begin a dialogue with Maryanne. Let her know that you are serious about working through your problems.

Second, contact your doctor as soon as possible and initiate a frank discussion. A great deal of progress has been made recently in understanding and treating male erectile dysfunction.

Most men occasionally experience the inability to have an erection, but repeated problems, whether they are organic or situational, constitute what was once referred to as impotence. Men with chronic problems are often too embarrassed to ask for help, and they may not have the impetus to do so. Statistics on how widespread this concern is among guys is hard to come by.

Getting an erection is a process that combines complex emotional and biological functions. So it’s clear that either a physiological or psychological problem can interfere in the arousal stage of the sexual response cycle.

For example, a relationship problem, depression, anxiety, prescription medications, excessive alcohol consumption, a hormone imbalance, cardiovascular disease, a neurological problem, being overweight, some cold and allergy medications or a poor diet can contribute to arousal dysfunction.

Major breakthroughs in treating erection problems were made by a chance discovery in the mid 1990’s. A researcher studying the effects of a new heart medication noticed a remarkable side effect in some of his male subjects…erections. When Viagra hit the market, it revolutionized erectile dysfunction therapy.

It is important to note that this medication, as well as all the other erectile dysfunction medications out there, are ‘erection enhancers’ not ‘erection inducers.’ Without proper stimulation, these medications will not cause an erection on their own.

There are some reported side effects to these medications and one can only get them by prescription, so talk to your doctor as soon as possible.

There are options. Stop thinking about what used to be, and start working at finding out what is currently possible. There is still no need to go without partnered sex and pleasuring. There are erogenous zones all over and in your body.

Your erection-centric sex life maybe over, but there is so much more available to you if only you give yourself and Maryanne a chance to make the discoveries. How much time do you have left? Don’t let this issue continue to contaminate your marriage and short-circuit the intimacy that is still available. Maryanne deserves better, and so do you. I’ll continue to be available to you as a coach and guide, if you wish. Because there’s no need to go through this alone if you don’t want to.

Now get out of here, and make something pleasurable happen. You won’t regret it.”

Posted on Sunday, February 17th, 2013 at 7:06 am by Life Matters Media

It’s an epidemic that to most of us, is invisible. A staggering four million seniors- almost one and ten- will suffer from malnutrition, according the American Academy of Family Physicians. The impact of malnutrition upon a senior is all-encompassing, often resulting in depression, improper healing and a depressed immune system.

Image courtesy A Place for Mom

Dr. Lindsey Jones-Born, a licensed naturopathic physician, has provided a list of ways to combat and identify malnutrition in seniors. She writes that eating can often be uncomfortable for seniors, due to physical changes like dental problems or weakened taste buds. Lack of support or companionship often intensifies these changes. “Seniors face a plethora of challenges when it comes to maintaining a nutritious diet,” Jones-Born writes.

To help recognize senior malnutrition, Jones-Born recommends taking stock of a loved one’s pantry and refrigerator. Checking specifically for old food and taking note of food amounts can reveal what is being consumed. It may also be helpful to watch for sudden weight loss and the fit of clothing.

She encourages five essential nutrients as part of seniors’ diets: Folic Acid, B12, vitamins C and D, and fatty acids. Plenty of water is also important, as some 30 percent of seniors are chronically dehydrated.

Income and malnutrition

Low income often results in malnutrition in seniors, according to The New York Times’ Paula Span. Last year, Span reported that the Government Accountability Office pointed to “food insecurity” as a major problem affecting seniors.

In 2009, some 20 percent of households with a low-income person over age 60 struggled with food insecurity. “These adults were uncertain of having or unable to acquire enough food because they lacked resources,” according to the report.

According to the G.A.O. report, “Older adults can and do access a number of resources to help alleviate food insecurity; however, many low-income older adults likely to need assistance from meals programs did not receive it.”

Posted on Thursday, November 29th, 2012 at 1:03 pm by Life Matters Media

Physicians who treat the terminally ill may suffer from emotional stress when unable to save patients’ lives. Burnout and compassion fatigue are two serious forms of occupational stress physicians may suffer, according to research by Michael Kearney, M.D.

Kearney, a palliative care physician at Santa Barbara Cottage Hospital in California, describes burnout as “the end stage of stresses between the individual and the work environment.” Compassion fatigue is “secondary post-traumatic stress disorder, or vicarious traumatization — trauma suffered when someone close to you is suffering.”

Health care journalist Jane Brody addresses the stress and anxiety oncologists struggle with in a new article for The New York Times. Brodywrites, “A doctor with compassion fatigue may avoid thoughts and feelings associated with a patient’s misery, become irritable and easily angered, and face physical and emotional distress when reminded of work with the dying.” Compassion fatigue may lead to burnout.

Up to 60 percent of practicing physicians report symptoms of burnout.

According to Brody: “Patients and families may not realize it, but doctors who care for people with incurable illness, and especially the terminally ill, often suffer with their patients. Unable to cope with their own feelings of frustration, failure and helplessness, doctors may react with anger, abruptness and avoidance.”

Physician suicide linked to occupational stress

According to Crystal Phend, senior staff writer for MedPage Today, “Suicide among physicians appears to follow a different profile than in the general population, with a greater role played by job stress and mental health problems.”

Phend cites a study by Katherine J. Gold, M.D., of the University of Michigan in Ann Arbor, who found that problems with work were three times more likely to have contributed to a physician’s suicide than a nonphysician’s. Mental illness was also 34 percent more common before a suicide among physicians.

Up to 60 percent of practicing physicians report symptoms of burnout

“The results of this study paint a picture of the typical physician suicide victim that is substantially different from that of the nonphysician suicide victim in several important ways,” Gold wrote for General Hospital Psychiatry. “Inadequate treatment and increased problems related to job stress may be potentially modifiable risk factors to reduce suicidal death among physicians.”

Although physicians have more access to health care, they may be reluctant to seek help. “I think stigma about mental health is a huge part of the story. There is a belief that physicians should be able to avoid depression or just ‘get over it’ by themselves,” Gold wrote.

More than 200 of the 31,636 suicide victims reported in the National Violent Death Reporting System from 2003 to 2008 were physicians.

Meditation may help physicians

A 2008 study published by the Journal of Palliative Medicine, in which researchers studied 18 oncologists, found that physicians who viewed their work with patients as both biomedical and psychosocial found end of life more satisfying than those with a more biomedical perspective.

“Physicians, who viewed their physician role as encompassing both biomedical and psychosocial aspects of care, reported a clear method of communication about end of life care, and an ability to positively influence patient and family coping with and acceptance of the dying process,” the researchers concluded.

“In contrast, participants who described primarily a biomedical role reported a more distant relationship with the patient, a sense of failure at not being able to alter the course of the disease, and an absence of collegial support.”

Kearney recommends “mindfulness meditation,” a Buddhist-influenced practice for physicians suffering from stress. “The doctor is able to recognize he’s being stressed, and it prevents him from invoking the survival defense mechanisms of fight (‘Let’s do another course of chemotherapy’), flight (‘There’s nothing more I can do for you — I’ll go get the chaplain’) and freeze (the doctor goes blank and does nothing).” He claims that even 8-10 minutes a day of “mindfulness meditation” can help.